Hi, everyone! It's been a long time since my last medical update. That wasn't intentional. It's just that life keeps interfering with my plans. The last time I shared an update was at the beginning of November, and a lot has happened since then, so there's a lot to share. Grab a cup of coffee and settle in. Here we go!
I took this picture on November 29, the day I got hooked up for my 3rd infusion of Trabectedin, my current chemo. You may recall that it's a 24-hour infusion, so I go home with the infusion pump in a highly fashionable fanny pack.
You can see my cane in this picture - actually, it was my dad's cane, which I took with me last July out of sentimentality, not because I thought I was soon going to need it. Using his cane actually represents incredible progress for me, in terms of my leg function. I was in a wheelchair in September, transitioned to a walker in October, and moved to a quad cane in early November. I bought the four-pronged cane on Amazon on a whim - no one had suggested I was ready for such a thing - and I was thrilled to discover I could walk with it. In mid-November, I was surprised when my Physical Medicine & Rehabilitation (PM&R) doctor said he thought I'd soon be able to use a single-pronged cane - it was hard to imagine feeling strong enough or stable enough to make that move. But a few days later, I tried it, and was shocked to find I could take a few steps with it. By the end of November, I was able to transition to exclusively using the single-pronged cane.
At that November PM&R appointment, the doctor also cleared me to drive, at least for short trips around town. After 2.5 months of being completely dependent on Paul to take me to my many medical appointments (and anywhere else I needed to go), this was really happy news.
At the beginning of December, I started physical therapy with a therapist who specializes in neurological rehabilitation. My injury, caused by a tumor in one of my hip flexors, was to the femoral nerve, which is one of the largest nerves in the leg. It supplies the muscles that move the hip, flex the thigh, and extend the knee. It's also the nerve that supplies sensation to the front and inside thigh as well as part of the lower leg. That's ... a lot. And it's a lot to lose, too. To do physical therapy with someone who works exclusively with people who have neurological injuries has been a real gift. She even has another patient who has a femoral nerve injury - only his is in *both* legs! She's been working with him for about a year - recovery from this kind of injury can be very slow.
In late December, I had CT scans (to assess response to the 3 rounds of chemo), an MRI scan (to assess response to the radiation I had to my pelvic bones and the muscle tumor there), and an appointment with a neurologist (to discuss prognosis of my nerve injury). All of this happened in the last few days before Christmas - it was a lot to process, especially at a time of year that is so busy (professionally as well as personally), and trying to share any kind of update at that time just felt overwhelming. Here are the upshots:
CT scans showed a mixed response, meaning some tumors grew, some tumors shrank, and some tumors remained roughly the same. The good news was that there were no new tumors. The unpleasant news was that, while most of the tumors that grew showed only a minimal increase in size, one in my liver had grown rather dramatically. It had first appeared on my September scans, when I was still off chemo, and it was 2.0cm at that time. The December scans showed it was now 4.7cm.
My medical team decided that, apart from this tumor, the overall picture was one of stability. So rather than switch to a different chemo option, we decided to stay on my current regiment for two more cycles and get radiation to that tumor. This was exactly what I was hoping for and was a huge relief! I find this chemo to be really easy to tolerate, so I'd like to stay on it as long as I can. Also, apart from clinical trials, I only have a couple of chemo options left - another reason I want to stay on this one as long as I can.
MRI scans of my pelvis showed a really good response to the radiation I had in September. In particular, the soft tissue component of the bone mets (i.e., the part of the tumor that grew beyond the bone and into the muscle and pressed on my femoral nerve) is almost entirely necrotic (i.e., DEAD). Radiation continues to do its work for many, many months, so this tumor should continue to shrink and die.
Neurology consult - this was a pretty disappointing and discouraging appointment. The neurologist referred to my nerve damage as "severe," and he thinks it's unlikely I'll regain full function of my leg. He declined to do any of the tests that could show the actual extent of my nerve damage (and thus give a real clue to prognosis), because he said it wouldn't change my treatment plan. I have a rant about this that I'll save. But it means that his assessment was based on somewhat subjective impressions rather than on the more objective measures I'd hoped for. I've decided, per my usual, to take his subjective impression as a dare.
On January 3, I got hooked up for my 4th trabectedin infusion. That afternoon, I went to physical therapy with my little fanny pack, and did my PT while getting infused with chemo. Pretty wild! I also had my 1-month PT assessment that day, and in just 4 weeks of rehab, I've already made (objective!) improvements in hip flexion and in hip abduction. My knee extension (i.e., the ability to straighten the leg from the knee) is still "trace" - the muscles are firing a bit, but the lower leg doesn't move. It's possible that I may yet regain this function, but even if I don't, it could be possible to regain the ability to walk in a somewhat "normal" fashion without a cane. We'll see.
Last week, I had Zoom consults with two different radiation oncology teams - the one I saw in St. Louis last spring and the one I saw here at U-M in September. I've decided to pursue treatment in St. Louis, where I'll be able to get the same kind of radiation I did last April, when I did it as part of a clinical trial. This time will be off trial, but it will be the same treatment dosage and on the same machine (the MRI-guided machine). Given the excellent results I got from this treatment last time, I'm hopeful about my outcomes again this time.
After one more cycle of chemo at the end of this month plus the radiation in St. Louis next month, I'll have scans again to see if I can keep staying on this chemo.
I should add that I'm doing much better pain-wise than I was back in the fall. In September, I was dealing with excruciating pain, almost all the time, even on painkillers. Now, I still have pain, but it's not all the time, and it's *so* much better than it was. I'm still on painkillers, but at a very low dosage. I have not recovered sensation in my thigh (front and side), knee (front and side), or lower leg (front and side), and I may not ever get that back.
Phew! That's 11 weeks of medical updates, y'all. Emotionally and mentally, it's been a bit of a roller coaster at times. But I feel like I'm on the right track for now. I'm so grateful, as always, for your love and for your good thoughts and prayers. Thank you, thank you.
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